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RCC Chromophobe

jnizzi

Posts: 18
Joined: May 2010

Apr 25, 2013 - 9:53 am

It is almost that time again when I get my scans to see if the cancer is still gone and I start thinking (and worrying) about it. My doctor said RCC Chromophobe rarely reoccurs and I shouldn't worry about it but I am just curious if there is anyone out there that has a similar diagnosis with recurrance?

I was 38 years old when I had my nephrectomy and my tumor was 7.1 cm, stage 2, grade 3.

I had a radical left nephrectomy in May 2010. Tumor was 11cm and fully encapsulated inside the kidney (Furman Grade 3 with extensive necrosis; Primary Tumor = pT2; Regional Lymph Nodes = pNX). There was no sign of spread - those lymph nodes nearby were deemed normal and so were not removed. At the point I was declared "NED". Biopsy showed that my tumor cell histology was chromphobe.

I had routine CT scans every 4 months after that. I was NED for the next 2+ years. However, this past July mets were discovered on my sacrum (base of my spine) and left femur (thigh/hip).

So, yes, chromophobe can recurr. Naturally, the larger the tumor size upon discovery, the higher the risk of recurrance. But there really are no guarantees with RCC.

In August 2010 I had Chromophobe Renal Cell Carcinoma (ChRCC)- 10cm tumor (stage 1) on left kidney. Tumor was encapsulated and had not spread. Kidney was removed. So far no reoccurrence. I’m having my next round of scans next week and for each scan I do get really nervous… But so far so good…

The difference between Stage 1 and Stage 2 is mainly tumor size, with 7cm being the cutoff. I'm pretty sure this is independent of type of RCC or cell histology. I don't think it's possible to have a tumor be 10cm and be Stage 1. Are you sure your pathology report said Stage 1?

swijak, could I ask you to let me have some missing data for the db I'm building?

I'd like to know the grade of your tumor, and your blood group plus confirmation that you live in the US, are caucasian (if not, what ethnicity?) I presume that you have no sarcomatoid element in your pathology but please confirm.

Even on the sample of the 20 odd of us I've collected so far, some possibly interesting facts are emerging.

Somewhere on the list this has probably been discussed, but is Grade a more important factor than Stage when determining severity or reoccurance factors?

Or is one just as important as the other, maybe even for different reasons? Or, is one just as important as the other, or is it an issue of the "totality" of the patholotheir what each mean to the other given the facts - individual criteria/ characteristics?

M, I'm surprised you don't remember, having been a regular here for a long time now. Yes, it's been discussed at great length but there will be plenty of newcomers who won't know and so it's worth running over it briefly yet again.

No, in fact Stage is very much more important than Grade for recurrence and life expectancy. In default of anything better, they are both very useful but Stage will outlast Grade as an indicator. Grade is a very crude and subjective method of assessing cellular change by examining cells under the microscope. It was developed by Fuhrman many years ago and is past its shelf life. In particular, it's recognised that it's only a useful indicator for clear cell RCC and, in fact it's so useless for chromophobe that a new grading method has been mooted specially for chRCC for use instead of Fuhrman grade.

Although Stage is far more significant, Grade adds some more predictive value, particularly at 3 and 4 values. If the cells look grossly different this usually means the histological type is changing to "de-differentiated" sarcomatoid form which is very much more aggressive and betokens a much more dismal prognosis.

Differently based and much more sophisticated predictive measures will supplant stage and grade assessment before long, one hopes. An example is the mGPS - the modified Glasgow Prognostic Score which can be easily calculated and can be done before nephrectomy (unlike grade assessment which is usually reported in one's path report following the op.) A good brief overview can be found at:

http://www.ncbi.nlm.nih.gov/pubmed/21266974

It doesn't take much looking to find any number of descriptions of stage and grade. This site contains a huge amount of info if you look around a bit, e.g. at

I'm 8 1/2 years out from chromophobe dx (fall, 2004) - had an 11cm encapsulated tumor with some necrosis. Post nephrectomy I was cancer free for almost 4 years before metastasis appeared near the vena cava and aorta, which surgery removed. Happily, I was cancer free again for 3 more years before mets became visible. Since July of last summer I have been in a clinical trial specifically for non-clear cell RCC (of which chromophobe is a type). Every day I take a 10mg pill of Afinitor (also known as everolimus) and every 2wks I go to NYC to get a 20-min infusion of Avastin (bevacizumab). So far, so good.

I offer my "resume" so you can see that you can live years before having a metastasis, and then you can live cancer free for years before another one pops up. And of course you may never have one. It's all a crap shoot. Unfortunately learning to live with that uncertainty is the journey you're on. You'll figure it out. What scares the heck out of you today you'll treat matter of factly down the road. If I've learned anything from all this it is that worry is pointless. You get absolutely nothing from it except more worry. That said, sometimes I handle scanxiety well, sometimes not so much. The trick is to stay in the moment. Choose to be positive. Choose to be happy. Know that you will deal with anything that might come up, as you always have, and life goes on. And when that ugly worry wort creeps into your psyche - as it inevitably will - acknowledge it for what it is - hey, you're human! - then slam the door on it. That's the trick.

I'm very curious about your staging. I've read in some detail the differences in staging descriptions, and the main difference between Stage 2 and Stage 3 is whether or not the tumor had grown into the veins, the adrenal gland, or outside the kidney (not fully encapsulated). You stated that you were Stage 2a but with vascular invasion. Did you notice if your pathology said whether it was micro or macro invasion of the veins? My tumor was smaller (6.8 cm) but was Staged as 3a because according to my pathology report the tumor had grown both micro and macroscopically into the veins (but not into the renal vein which would have made it Stage 3b). I'm just wondering how they differentiated between 2a with vascular invasion and this wasn't Stage 3. I'm assuming your tumor had only grown microscopically into the veins and that's why you were staged 2. There may be some art and opinion on this staging process (like everything else in life, I suppose).

This may explain why my new hospital required their own pathologist to review my slides and do a new pathology report. They didn't necessarily trust my previous hospital. I wondered about that.

The pathology didn't really specify what type it was. It just says "Vascular invasion present. Vascular and ureteral margins are free of tumor." From what the doctors said, it sounds like it was just was microscopically invasive.

Tex- I dont' really have a way of finding out my bloodtype now, but next time I get scans I will ask.

Mimir could you find out your blood group and let me know? It's a good idea to know your blood type, particularly if you ever need surgery. I carry a card - if I need blood it has to be an exact match to my own (in AB0 and Rhesus groups) - blood from any other group is likely to actually kill me.

If you find out yours, please let me know to complete the entry for your case.

I'm NED for the moment, but there is some concern over some "hypermetabolic" (though not enlarged) lymph nodes.

Living with uncertaintly seems like it's going to be a new way of life for me. It's not all bad: now every day that I am NED seems like a gift to be treasured. I think in a way I don't want to miss out on treasuring every moment, because if I do come back with mets, I don't want to look back on this time and regret having taken any of it for granted.

I'm NED for the moment, but there is some concern over some "hypermetabolic" (though not enlarged) lymph nodes.

Living with uncertaintly seems like it's going to be a new way of life for me. It's not all bad: now every day that I am NED seems like a gift to be treasured. I think in a way I don't want to miss out on treasuring every moment, because if I do come back with mets, I don't want to look back on this time and regret having taken any of it for granted.

Thanks Jackaroe - duly entered. 13 of us so far - before long I may have accumulated some basic facts about as many chRCC patients as have been studied in any of the research papers. It may yield nothing of use, but you don't know if you don't try, right?

Thanks. I've corrected the Stage to 2 . Were you given a Fuhrman Grade? It would, like the Stage, be a number from 1 to 4. If you could find out your blood group also it would help to complete the few gaps in the database.

Thanks - looking forward to learning your blood group when you can find out - it's not a bad thing to know about for yourself anyway in case you need a blood transfusion or are about to start a family.

I'm guessing you have a switched-on pathologist who knows that actually Fuhrman grading really is N/A in chromophobe cases - most pathologists assign a Fuhrman grade, even though it's meaningless with our pathology!

Female, 47, May 2013, T1b, Histologic grade N/A (?), 7cm, right side, USA, Caucasian, B+, I have had a hysterectomy, tonsillectomy, and a bladder repair. Now the r nephrectomy and l oopherectomy. I am, nor have I ever been on systemic drugs.

In both the US and Europe, chromophobe RCC accounts for only about one in twenty cases of RCC. So, on the above figures, You could reckon that chromophobe RCC would account for around 0.15% of cancer cases in men and 0.1% of cancer cases in women. This needs to be tweaked just a little because although kidney cancer is more common in males than in females, chromophobe is a bit different - the incidence is more nearly equal between the genders.

Since chRCC is so rare, I'm quite pleased that I've now got 24 people in my db - drawn from the CSN and KIDNEY-ONC/Smart Patients forums. Of those 15 are male and 9 female, which is actually more like the distribution seen across RCC in general. It may be by sheer chance (or some sort of self-reporting bias) that so far all in my little db are Caucasian, except for one CSN member who lives in Malaysia and, not surprisingly, is Asian. Apart from myself (a UK Celt) all the other 22 are in the US so it surprises me that those 22 don't include any Afro-Americans, Hispanics, Native Americans or Asian Americans, but this may not have any significance. However, we do know, for example, that Afro-Americans seem more susceptible to papillary RCC so it's not impossible that my little sample is revealing a fact, rather than just a chance appearance. I hope that larger numbers in the db will make this clearer. The same goes for blood groups, where I don't have complete information but the distribution looks a little surprising so far, with fewer type 0 members than I would have expected, but, again, this may be just a chance occurrence and not reflecting reality.

What does intrigue me is that there seems to be a real gender difference in laterality - significant (after adding you in) at a level < 0.02. It appears that males are much more likely to have left kidney cancer and females right kidney. If this proves to be the case, I have no idea why (I had a theory but I have discounted it as probably invalid) but I do believe it would have to merit further investigation.

I'm so glad you posted the treatment you are undergoing. This is an answer to the question I was asking down below about VEGF and mTOR inhibitors being used together. It's the first I've heard of a study combining the two. I'm taking 10mg of Afinitor a day as part of an adjuvant therapy drug trial.

Could you please share your side effects? I'd be interested in hearing about any side effects you are having. In particular, I'd like to know about changes to your blood pressure, diarrhea, nausea, fatigue, creatinine/kidney function, or liver function and anything else you may have experienced that you think is a result of your drugs.

Tex is right. We're members of the rare chromophobe club here - there are so few of us that we cling when we find each other. But I'm happy to tell you about my side effects. Pretty darn minimal day to day. For me, most have come in waves and then disappeared. Early on I had a few mouth sores, which cleared up with medication.. I learned it was not a good idea to eat big chunky pretzels loaded with salt - seemed to encourage the sores. They haven't reappeared.Then I had a moderate itchy rash that disappeared within days of using the topical cream I was prescribed. Got that metal taste for a while. It went away on its own. I don't think my taste buds are as right-on as they used to be, but it is certainly not a problem. Over the course of the last nine months I've gotten headaches - in clusters sometimes. Annoyingly often for a week or two, then scattered or gone for weeks or even a month at a time. Early on I developed some ground glass opacities in my lungs which we are watching. They diminished a bit and then some new ones appeared. But they are only symptomatic when I walk up a hill or hustle to catch a bus or a cab. My triglycerides and cholesterol (both of which were quite low before starting the trial) began to rise and in February I was put on Lovazza to control the triglycerides. Numbers for both have returned to normal. My BP has also been heading north. Just today I started taking Norvasc (also known as Amlodipine) to lower it. Fatigue sometimes. Couldn't figure out how much was due to winter doldrums, but at any rate it hasnt been debilitating. Liver function and creatinine/kidney function are fine. And so there you have it. But that's only my story. Everyone's different.

I have been away from the site for some time and just saw the RCC Chromophobe thread. Here is my info: white male age 59 at time of diagnosis in July 2012 from the southeast US with type B+ blood. Tumor was 17.5cm on right kidney stage 2b, grade 4 "chromophobe RCC with 5-10% sarcomatoid features" and "margins negative for carcinoma". I had a right radical (open) nephrectomy September 7, 2012 and am having six month abdominal and pelvic MRI or CT scans with a chest x-ray every six months. I am now being followed by an oncologist, even though there has been no metastasis, who ordered a chest CT at one year just for a base line. So far so good, just the normal scanexity every six months. Thanks for doing this. I hope you will "publish" the compilation.

As a matter of fact, it's of particular interest to me because I think I'm the only person still living with metastatic, sarcomatoid chromophobe RCC. I realise now that I should have had an extra column for sarcomatoid elements. You and I are the only ones I'm aware of with schRCC but I hope anyone reading this who is in our boat will let me know.

Yours is by far the largest tumor in the database so far (even though chRCC tumors tend to be the biggest) and that, combined with the small sarcomatoid element, make it remarkable that you have no mets - long may that continue and I shall pray that it stays that way. Without wanting to be alarmist though, I'm a little surprised that you aren't being followed up more frequently. I've been getting CT scans with contrast (and one important hybrid PET/CT scan) every 12 weeks or so, but then my pathology is mostly sarcomatoid and with extensive sporadic necrosis. Stay well.

No, I only have chromophobe - no sarcomatoid cells. Not yet anyway. As Tex will tell you, any tumor - clear cell, chromophobe, papillary, etc. histology - can evolve into possessing a more aggressive sarcomatoid percentage of cells.

But Tex is quite unique in having both - and in responding so well while on Votrient.

I understood you had chRCC and not ccRCC. I was just interested in what side effects would look like with combined VEGF drug and mTOR inhibitor drug. This is the first I've heard of anyone being given them at the same time and I was curious if the side effects would be additive, or even worse. It sounds manageable, and that's good.

I understood you had chRCC and not ccRCC. I was just interested in what side effects would look like with combined VEGF drug and mTOR inhibitor drug. This is the first I've heard of anyone being given them at the same time and I was curious if the side effects would be additive, or even worse. It sounds manageable, and that's good.

Thanks for the kind words TW. I realized when I was glancing past my earlier post that the date was wrong. I was diagnosed in June of 2011 and had the nephrectomy in September 2011. I will have my 18 month scans in June. I am more anxious about these since I understand metastisis of chRCC is more common in the 18 to 36 month period. For what its worth, my pathology report describes the sarcomatoid component as having the appearance of "andiosarcoma".

I am alive-how were your mets discovered and did you have any symptoms?

ourfriendjohn-i am curious about your comment that states mets of chRCC are more common 18-36 months out. I have not read that anywhere. Is that the case with everyone here? Mets are more likely to be discovered that far out?

Just wondering about anyone that has had mets if they had any symptoms and how the mets were discovered I also wonder if you all see an oncologist or a urologist. My doctor is a ulologist. In the begining he told me that surgery is basically a "cure" and it is very unlikely that this would reoccur and I dont need an oncologist. What do you all think?

Jnizzi. There is a long and short answer to your question of how my mets were discovered. Short answer: "suspicious" lesions on my sacrum were seen on my routine (every 3 month) CT-Scan. Based on that a follow up biopsy and full-body nuclear bone scan were ordered by my onc. The biopsy then confirmed the lesion observed was mRCC and the full-body scan revealed additional lesions on my left femur.

Long answer: In hindsight there were several missed clues during the previous 12 months. One day, about a year before the discovery, I started experiencing an intense diffuse pain in my left thigh/leg. But I attributed that to severe turbulance that I had experienced the previous day (while flying in a small plane). The pain took about 10 days to slowly subside. About 4 months later I experienced the same pain in the same area. This time I attributed it to my climbing up a steep mountain trail the day before. Again it took about 10 days to fully subside. About 4 months after that I had a repeat of the pain - but this time I could not attribute it to anything. So I scheduled a meeting with a rheumatologist. She diagnosed it as "acute bursitis". At no time did I suspect that these episodes might have been related to my RCC (that's how ignorant I was about this disease back then). Nor did any of my routine CT-scans show any problem during this period - likely because they were not imaging outside of my abdomen/pelvis and whatever was going on was in my thigh. Incidentally, that rheumatologist ordered a test of my C-Reactive Protein level (a measure of internal inflammation). The first test came back so high (89 mg/L) that she just tossed those results out as faulty and ordered another test. (Normal is considered anywhere between 1.0-4.0 mg/L; optimal is below 1.0 mg/L). That C-R P retest (done one week later) was lower - "only" 9.0 mg/L - but by then I was no longer in any pain. Those tests were done in April/May 2012. It was two months later (July) when the mystery behind the repeating "bursitis" in my left femur was finally solved.

thank you for your response. Part of me agrees with my doctor and thinks I am cured and I should not worry about anything...the other part of me knows this really was cancer and I have to be an advocate for myself and ask the right questions and research because it seems so little is known about this specific type of cancer. I do worry that a weird pain i have in my hip is a bone met but i am sure the doc will think i am crazy if i bring it up to him. But i also dont want to be the one who ignored something and later find out that it was something and if only i pushed and demanded more test from my doctor it could have saved my life. I worry that i am getting an xray and a ct scan and they say looks good see you next year...a year is a long time for this crap to be growing all over inside of me...uggg.

anyway...positive thoughts.... :) I am usually not this crazy...i just start thinking about it when i have to go back in for my scans.

Thanks to everyone for the replys...it is good to know i am not alone in this

Sometimes - and I think this is one of those times - you just have to stand firm and not take no for an answer. I did not realize you were experiencing any pain in your thigh. Yes, it may be turn out to be nothing serious. But the only way to know for sure if it is due to bone mets is to insist on doing a full-body nuclear bone scan (a CT-Scan will not be not sufficient for this).

I had an appointment with my regular doctor and told him about the pain in my hip/thigh area, he had an x ray taken and said there was a "tiny bone spur" but he didnt think that was causing my pain and is sending me to a PT. I asked if he thought it could be related to my cancer and he said doubtful. hmmm.

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